Looking for a Migraine Specialist.

Can anyone reccomend a neurologist who specializes in migraines?


if you don’t get a timely response, I believe there’s an updated link in the community forums of migraine.com

As a chronic sufferer, I wish you speedy relief, and good support.


I see Dr. Lisa Coohill from Summit Medical Group in Berkeley Heights.  Certainly include her on your list of docs.


This is a list I was given about 5 years ago:

Doctor recommendations:
 
Dr. Mark Green 212-241-7076 Dir. of Headache Clinic at Mt. Sinai
 
Dr. Newman, St Lukes
 
Seth Stoller, Neurologist in Summit

Steven Lomazow, Neurologist and headache specialist, Belleville 973-751-5634

 
Dr. Denise Chou, (Columbia Neurology Group);" Very smart, able to help, but bedside manner is a little lacking"



Have just switched to Adelene Jann at NYU Langone.  LOVED her.  First consult was about 45 minutes.  And she made me take notes.  


ctrzaska said:
Have just switched to Adelene Jann at NYU Langone.  LOVED her.  First consult was about 45 minutes.  And she made me take notes.  

 If you don’t mind me asking, why did you choose a doctor in the City?  Is there an advantage?


GoSlugs said:


ctrzaska said:
Have just switched to Adelene Jann at NYU Langone.  LOVED her.  First consult was about 45 minutes.  And she made me take notes.  
 If you don’t mind me asking, why did you choose a doctor in the City?  Is there an advantage?

 Both my GP and two different NJ neuros had run their courses of treatment options, and all three advised on separate occasions to head to a few recos there.  The breadth of doctors and specialization can’t be met here IMO (which isn’t to say that there aren’t talented folks here in NJ—there are many of them), and I’ve found it’s easier to find those that also teach and are more on the cutting edge.  Maybe that’s not entirely true, but it held some rational validity to me anyway, for whatever it’s worth. 


May I ask, what have been some of the diagnosed causes and the treatments?


Maria Schriver hosted a great show on PBS a couple of months ago during which doctors concluded that migraines stem from a neurological disorder.  Its unknown why so many people suffer from them though, and why it's mostly women.  My triggers are:  strenuous activity, extreme temperatures, changes in weather patterns, and alcohol.  I've been on Riztriptan for a few years, because I don't qualify for preventative meds. 


conandrob240 said:
May I ask, what have been some of the diagnosed causes and the treatments?

 In general, they run the gamut on both ends.  Diet including gluten, barometric pressure, stress, various neurological and blood-related issues, etc etc.  It’s an individual thing, often prevalent in women and with inception often in the teen years.  Treatments are twofold: preventative (changes in diet, a plethora of blood meds, seizure meds, antidepressants, acupuncture, etc etc) and palliative (usually triptans, but there’s a host of other random  options). 


This morning’s migraine took 36 hours to blossom, and apart from my usual preventives and strict diet controls, has required what you call Zomig (I think; I call it Zoltrip).  My vision is badly blurred, my speech is slurred for almost 24 hours, I’m badly nauseous( this is unusual for me), I have no spatial awareness, I keep half-blacking out, my feet are like ice, someone has hacked off the entire back of my head, I’m very susceptible to aromas and smells (anything on the breeze makes me want to hurl), and noises cut right through me like a scalpel.

I’ve just noticed I’ve started shaking (like a full-body shivering). So, although in my mind this doesn’t feel so bad yet, it’s probably going to be a multi-day episode. Im going to take a maxalon too (the other was 2hoursago and hasn’t really touched it), and im going to bed. 

This is really not my usual style; I’m either more silent (middle of the night) kind, or semi-silent lose control or awareness of body bits type (with nasty stomach-migraine mix). 


Be aware there are over 300 signs and symptoms for migraine syndrome.


ouch.  My clusters present somewhat “normally”, but my migraines generally don’t (yes, I get them layered on top of each other— a rather insidious combo of pain unlike anything I could describe).  No nausea, little light sensitivity, no aura, etc. 


Hope this clears sooner rather than later.  Sounds like a killer. 


yeah, I get layers on layers too. According to standard textbooks, it can't happen. *shrug* At least our docs know better cheese

Not trying for pity, but it's really set in, I'm glad I spent the day lying down and quiet even though I had lots planned. My forehead feels like concrete now, and I feel like I'm balancing an invisible tonne-weight on my head. Nausea is worse/constant. Was seeing doubled at one stage. 

Hey, do you get the changes in depth/distance perspectives even when your eyes are closed? Like you're moving quickly but you know you're not so it's like a motionless horizontal vertigo?


To give everyone an overview of our situation: My 11 year old daughter is the one with the migraines.  Our understanding is that at that age, the triggers can shift rapidly and vary from month to month.  As things stand now, the primary trigger seems to be dehydration.

It seems that most of the migraine treatments that are on the market have been tested almost exclusively on adults and there are suggestions that many of them may have developmental side effects for children so we have steered away from them but this summer has been very difficult and we are interested in pursuing a deeper understanding with a specialist.


ctrzaska said:
ouch.  My clusters present somewhat “normally”, but my migraines generally don’t (yes, I get them layered on top of each other— a rather insidious combo of pain unlike anything I could describe).  No nausea, little light sensitivity, no aura, etc. 


Hope this clears sooner rather than later.  Sounds like a killer. 

 Can you describe what you mean by "layers"?


joanne said:
This morning’s migraine took 36 hours to blossom, and apart from my usual preventives and strict diet controls, has required what you call Zomig (I think; I call it Zoltrip).  My vision is badly blurred, my speech is slurred for almost 24 hours, I’m badly nauseous( this is unusual for me), I have no spatial awareness, I keep half-blacking out, my feet are like ice, someone has hacked off the entire back of my head, I’m very susceptible to aromas and smells (anything on the breeze makes me want to hurl), and noises cut right through me like a scalpel.
I’ve just noticed I’ve started shaking (like a full-body shivering). So, although in my mind this doesn’t feel so bad yet, it’s probably going to be a multi-day episode. Im going to take a maxalon too (the other was 2hoursago and hasn’t really touched it), and im going to bed. 
This is really not my usual style; I’m either more silent (middle of the night) kind, or semi-silent lose control or awareness of body bits type (with nasty stomach-migraine mix). 


Be aware there are over 300 signs and symptoms for migraine syndrome.

 That sounds horrendous.  Thank you (and thanks to everyone else as well) for sharing your experiences.


Joanne:  I get the changes in depth/distance perspectives as well.

Slugs:  I’ve had terrible headaches since I was 5, but was diagnosed with migraines at 10.  All back in the early 70s and as you can imagine, not much pain relief available back then.  I don’t know what’s out the for kids these days, but hook up with a good pediatric neurologist if you can.  


GoSlugs, it’s really important not to be shocked or frightened by what you read because every migraine is different, and every migraineur has different experiences. We use common terminology, but mostly the real experts are beginning to understand that it really is true that each episode is different. 

Your daughter may share a trait with many hormonal migraineurs: light and heat aren’t her friends when she’s susceptible. There are special ‘cool pads’ for using on forehead, eyes, back of neck that help ease the migraine, and I believe there’s a kind of ‘cool cap’. Talk with the pharmacist.  Some people wear special, large-lensed sunglasses too, if they have to leave home, so that most bright light is filtered out.

I get what’s called ‘Alice in Wonderland’ syndrome: my perception of perspective and sensations changes, because my brain is suddenly swamped with too much information it can’t process at once. (Standard textbooks reckon adults my age don’t have it any more. My neuro listens to his patients) For example, maybe I literally can’t see half my my body, or feel it - but I can still walk and carry things (I shouldn’t drive!). Lots of kids and teenagers have Alice in Wonderland stuff, especially with sounds and colours. 

The ‘layers’ are when you’re having one migraine, and then you realise something new is starting up that’s signalling you’re prodoming i.e starting another. It can take several hours or days to actually get the full migraine, and then maybe afterwards you could be hungover for a bit. 


Bklyngirl, I want to hug you!  It’s the symptom I’m finding hardest to explain to non-migraineurs. And my changes come on suddenly, like scene changes in a movie, so it’s like the whole world has moved but no-one warned me. oh oh


P:S I’m better today, just sensitive to sounds. 


Joanne:  Yes!  As a kid I used to describe it as a "weird" feeling where everything around me was either coming at me or I'm going to them, yet i wasn't moving.  I'm the only one in my family with migraines so as you can imaging, my family thought I was nuts!  lol.  In my teens, I realized that that "weird" feeling signaled the onset of a migraine and I began running for cover whenever i got it!  





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